Posted
by
Soulskillon Friday August 13, 2010 @04:56PM
from the never-forget dept.

jamie passes along a story in the NY Times about how an unprecedented level of openness and data-sharing among scientists involved in the study of Alzheimer's disease has yielded a wealth of new research papers and may become the template for making progress in dealing with other afflictions. Quoting:
"The key to the Alzheimer's project was an agreement as ambitious as its goal: not just to raise money, not just to do research on a vast scale, but also to share all the data, making every single finding public immediately, available to anyone with a computer anywhere in the world. No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort. 'It was unbelievable,' said Dr. John Q. Trojanowski, an Alzheimer's researcher at the University of Pennsylvania. 'It's not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.'"

Yeah, I'm exaggerating, but not by a whole lot. Even in the best of cases, things like extrasolar planet discoveries, the LHC or other "fundamental" science don't have applications within 10 if not 20 or 50 years, maybe more. They're of no use to business even though business will thrive on it in the future.

Back when Tycho Brahe refused to give Kepler access to his observations of the night sky and Darwin didn't publish his ideas until decades after he first had them. And when Mendel fudged his data about heredity and Millikan threw away data he didn't like about the charge of an electron. Oh, wait.

It's not that Darwin didn't want to publish his ideas, he shared them with his friends readily enough. He just didn't want to deal with the religious and political shit storm that his work was going to cause. It wasn't until he was about to get scooped by Wallace that his friends convinced him to jointly present a paper with Wallace.

Ideas are patented, but actual research is still hidden until it's profitable. Even then the research is not 100% made public. Compare this to the RFC style progression of research in which people had no reservations about participating.

whereas now the hiding and protecting of research seems codified into our society.

Maybe that's because various scientists and researchers don't want to deal with the headache and pain that comes along with some misinformed boob misinterpreting valid data and ranting about how it's proof the the researcher/scientist is a fraud and criminal. The whole climate change debate thing comes to mind. When climate researchers' data did get out in the open, various news sources jumped all over the researchers like a pack of ravenous wolves. Hell, there was literally an army of bloggers who were ac

No, the real reason is institutional. Scientific careers are made by holding your cards close to your chest for as long as possible, then publishing impressive conclusions while still keeping your most important data either cryptic or unstructured. The "business model" is a mess, and it isn't about the misinterpreting boob, it's about the people who *would* understand your work.

This story (about the breakthrough in Alzheimer's work) is a very good one to spread around, because it will produce some strong pr

The way to "share openly" their newly made discoveries is by publishing them. If they publish lots and are a good instructor, there would seem to be little in the way of them getting tenure.

Constantly getting "scooped" (someone else publishing before they do on the same topic) could be a problem I suppose, but in practice in the fields I am familiar with, sharing your results over coffee at a conference poses little risk since in order to publish anything they would actually have to completely repeat the ex

Maybe that's because various scientists and researchers don't want to deal with the headache and pain that comes along with some misinformed boob misinterpreting valid data and ranting about how it's proof the the researcher/scientist is a fraud and criminal. The whole climate change debate thing comes to mind. When climate researchers' data did get out in the open, various news sources jumped all over the researchers like a pack of ravenous wolves. Hell, there was literally an army of bloggers who were actively seeking any nit they could find to discredit the research.

Can you point to a case where this was a serious problem as opposed to benefit? The case of climate change is not a good example because it is a high stakes game. You would expect, with the sort of claims that are made there, greater scrutiny of those claims, the people who made them, and the processes by which they arrived at those conclusions. That scrutiny includes a bunch of boobs with blogs. If the scientists (who I might add seem in large part publicly funded) can't weather that, then maybe we should

Scientists willing to tackle AGW (especially in one particular way...) can also go for funding to fossil fuel energy companies BTW; entities very interested in the results of such research, and one of the biggest and most powerful around. Or to some transnational organisations with deep pockets, controlling said industry...

How the above is not exactly happening (certainly as far as any results go), on the contrary - energy companies are more and more accepting of AGW, is one of the better things showing val

How the above is not exactly happening (certainly as far as any results go), on the contrary - energy companies are more and more accepting of AGW, is one of the better things showing validity of the idea.

So who is persecuting these hapless scientists and why, if it's not the rich energy companies?

Also, remember tobacco industry?

Yes. I don't seem to recall that there was persecution of scientists who presented evidence that smoking was harmful to your health. Instead the approach was to present counterstudies that purported to show the opposite and to conceal evidence that supported the claim that smoking was harmful. Which by some amazing coincidence, the people who were concealing evidence didn't fall into the category of scientists conc

Can you prove it, beyond a shadow of a doubt?!?Can you show me the smoking gun, how witholding of a specific piece of information caused a specific death?!?

I didn't think so. Therefore your entire argument is worthless, which of course means that the ONLY True Path to scientific knowledge and prosperity for all remains Free Market Capitalism and strong enforcement of Intellectual Property Law.

** Insert sarcasm emoticon here. The problem is not so much that some people might think this an annoying serious

You really are a dolt, Proof is mind boggling easy. Just compile statistics from around the globe of all the people that dies because they couldn't afford a profit inflated patented drug, literally millions of people, year in and year out. Look at all those threats of trade sanction when countries told the patent freaks to ESAD and produced patent infringing generics that saved millions of dollars and millions of lives. Do patents kill, absolutely.

For some "skeptics", most notably I believe those who are making their mints based on the status quo, there is no such thing as sufficient proof. There is no line direct enough for them to admit that their current business model has flaws. To drop back to my example, about the only way they would admit that such a medical patent might be a problem is if the patent holder shoved it in someone's mouth, choked and killed them. And even then only in front

A hint with sarcasm, it must exceed the extreme of the group it represents. In the case of right wing beliefs, you comment was not sarcastic at all but message spot on, something they acknowledge as coming from one of their own. You have to dig a little deeper, push well beyond what your would accept as the norm.

When you attempt to reach out to express the extremes of human mores, the words and style of expression must not just touch on but exceed norm and, when they norm is they farm right, the derision

In our time, we have much better ways to communicate, yet our abilities are stifled far below maximum potential because of what appears to be petty reasons

My impression is that in research, being selfish with data and patenting things is the exception, not the norm. In much of the hot research you read about on front-page NY times, like curing cancer, sure, there's a lot of money to be made there so people are going to be greedy. But most research isn't so profitable. Pretty much all basic biology, there's little to be patented there.

For example it seems to me that if someone isn't sharing their data in my field (cell biology) it's because they don't fully

My impression is that in research, being selfish with data and patenting things is the exception, not the norm...

It depends on the field, and the person. Medical science is the worst of the lot. Not only are a lot of the studies total crap, but they treat every little thing as a billion dollar a year patentable thing. Seriously we have been waiting for months for some data from a company but are still waiting for all the NDA to be signed. And we get paid *by the month* while we are working on the project.

In other fields its very cooperative. But you also get some very paranoid scientist.

Research funded by capitalism does not "replace" any other type of research; it supplements it. More science is a good thing.

Though I would strongly support any legislation requiring all privately-funded research to be published. It is a shame that good research goes unpublished today because its conclusions are not beneficial to its financiers.

I'm all for openness, but there's some reason to believe that the person taking the data is the person best fit to analyze the data. However, in the medical field, this may not be true. Since all good studies in medicine will be double blind, there should be no problem with outsiders analyzing the data. Let's not get carried away and assume this would work for all scientific fields, though.

Again, openness is good, but sometimes faulty data won't be discovered to be faulty until the scientist who took it has

If all mankind could work together for a single goal, how long would it take to accomplish it?

The answer is "One hell of alot faster than working the way we do now."

Of course the idea is irrationally optimistic and frought with problems both big (organizational) and small (self interest/motivation.) However, this data sharing between interested, relevant parties is a microcosm of the idea as it allows unfetterd collaboration worldwide. The results speak for th

The mess we have where potentially-useful information is kept secret and proprietary, in the name of profit or even just potential profit.

The problem is that research only gets corporately funded if the corporation believes it can make a long term profit from the research. For diseases, the long term profit is usually in the form of selling the drugs that are developed. The cynic in me thinks that corporations would prefer developing maintenance type drugs instead of curative drugs (eg why cure aids when you can sell a drug to kept in check). The realist in me says that the scientists doing the research would rather develop a full cure, bu

Has the cynic in you heard about the new prostate cancer vaccine? They've decided to charge $90k for it, because that's the average cost of treatment for prostate cancer, and people should be willing to pay just as much to avoid the treatment as they would to have it. I'm not kidding.

I see this is getting modded down because people don't appreciate critical questions. Quite ironic given the context. Not to speak for Moridineas, but I think the point he is getting at is that science is a process that has no intrinsic position on economics (except where one is applying the scientific method to study economics). Therefore science where conducted properly is no better or worse in a given economic order. Of course where we talking about this issue of the free exchange of information that may

For some bizarre reason, the US, the EU, and many other places have decided that it's okay to patent basic concepts: human and animal genes, business methods, math (also known as software patents), etc, rather than the end-stage products that patents were originally meant to cover. As a result, many fields of innovation are grinding to a halt, as people scramble to place roadblocks and paywalls across the road of innovation. Biology can't go anywhere because dozens of different groups have patents on basic testing procedures and even the genes themselves. Computer programmers can't get anywhere because programming has become a minefield, where bits arranged in certain ways can suddenly see you being sued for millions of dollars.

The moment the walls are lowered, even for a short period in a limited field, great things can be accomplished in a short amount of time, but the exceptions will remain exceptions if the non-innovators keep thinking there's profit to be made in continual delay.

If we're talking software patents and business methods, sure, I think they're stupid and should probably not be allowed. But given that they are, by their very nature stupid, how detrimental could they possibly be? ie, they're a total strawman in this conversation.

You're greatly exaggerating by saying biology and computer programming can't get anywhere because of patents. It's rare to have a problem with software patents. When there is a problem, it makes the news on Slashdot. And then again the next week. And the month after that.

Real patent problems almost never to never make news. They are about people dropping research outright, without ever getting to the point of infringing patents, because of simple FEAR or infringement, or because when they start, the lawyer tells them to drop it because of the aforementioned risk. Number of such cases dwarfs the cases that actually progress to level of getting actual patent problems.

Yes, it is this bad. What you see on slashdot doesn't count as a tip of an iceberg - it's more of a few ice crystals from the tip of the iceberg at best.

Something I wrote on that begins: http://www.pdfernhout.net/open-letter-to-grantmakers-and-donors-on-copyright-policy.html [pdfernhout.net]"Foundations, other grantmaking agencies handling public tax-exempt dollars, and charitable donors need to consider the implications for their grantmaking or donation policies if they use a now obsolete charitable model of subsidizing proprietary publishing and proprietary research. In order to improve the effectiveness and collaborativeness of the non-profit sector overall, it is suggested these grantmaking organizations and donors move to requiring grantees to make any resulting copyrighted digital materials freely available on the internet, including free licenses granting the right for others to make and redistribute new derivative works without further permission. It is also suggested patents resulting from charitably subsidized research research also be made freely available for general use. The alternative of allowing charitable dollars to result in proprietary copyrights and proprietary patents is corrupting the non-profit sector as it results in a conflict of interest between a non-profit's primary mission of helping humanity through freely sharing knowledge (made possible at little cost by the internet) and a desire to maximize short term revenues through charging licensing fees for access to patents and copyrights. In essence, with the change of publishing and communication economics made possible by the wide spread use of the internet, tax-exempt non-profits have become, perhaps unwittingly, caught up in a new form of "self-dealing", and it is up to donors and grantmakers (and eventually lawmakers) to prevent this by requiring free licensing of results as a condition of their grants and donations. "

So, the answers are out there even without people cooperating to make some magic bullet. The cooperation through basic publications and the hard work of a few key people like Dr. John Cannell and Dr. Joel Fuhrman putting together such information has made huge difference. Now if just more people would pay attention to these findings -- but unfortunately there is not much profit in emphasizing getting mdoerate sunlight exposure (or taking cheap supplements) and eating right, so that is another part of the partadigm problem of a for-profit health care and R&D system.

Moderate exercise and some other things can help too (see Dr. Andrew Weil for the bigger picture of the holistic side fo health, though his nutrition advice is not quite as good as the above links) but again, there is not the huge profits in that as, say, doing triple bypasses.

By the way, a bit unrelated, but on cars and oil,:-) here is a post by me on why luxury safer electric cars should be given out free to everyone in the USA in order to lower taxes (so, sometimes redesign of a magic bullet is cheaper::-) "Why luxury safer electric cars should be free-to-the-user"http://groups.google.com/group/openmanufacturing/msg/09eb7f4c973349f2?hl=en [google.com]

And that does not even take into account using the cars as part of a smart grid, or the possibility our

You wrote: "I think I was the only person in Detroit to see it coming. I looked at what japanese cars were out there, the build quality, mileage, price, etc.then looked at the insane detroit horsepower wars with ancient car designs, just throw more pushrod engine at the situation.. I went "these people are all loony tunes crazy" and quit."

I guess part of the problem with predictions is where does it leave the individual who believes them when it is so out of step with what everyone else believes? There you

And it can be a tension where to focus, because, the fact is, some people do make policy (bureaucrats or congresspeople), although, it's also true that good examples that get duplicated can help shift policy (eventually), or, as you suggest, just bypass go

I have to agree with your sentiment. And "Nature Deficit" disorder is part of it, but that does not explain why most kids may not understand what a bootloader is on a computer or whatever if they are indoors a lot around computers. I guess I was lucky to just come in at the edge of things (my first computer was a 6502-based KIM-I, and my first languages were Assembler, Commodore BASIC, and Forth). Still, anyone can run a Virtual Machine on their PC and watch what happens with a simulated computer booting up

What on earth do specious patents (patents which are a GOVERNMENT granted monopoly) have to do with what the original poster said?

Secondly, quite frankly, I think you're crazy if you honestly believe "biology can't go anywhere" or "computer programmers can't get anywhere" because those two fields are moving faster than just about any other right now. I'd love to see how exactly you can define the situation so that what you said is remotely connected to reality though?

Because, hardcore libertarians aside, most people are rational enough to realize that the government should hold a monopoly on the use of force (ie, police and military) and that the government should handle roads.

You certainly do hear people complain about the government's involvement in the car industry as socialism. I will personally never buy from GM now.

I agree with you also. In my idealistic mind, I would love to see heavy government investment into the university system.

Do the universities really require more special treatment from the governments? Isn't it funny how universities are about the only institutions around that aren't taxed, can raise prices every single year (no matter inflation, deflation or the state of the economy-- and yet also beg for money to be donated while sitting on in many cases billions of dollars), and the real kicker--are in such cahoots with the government that student loans are the only debt that can never be discharged even in bankruptcy! That

It's great to see that they suspended profit and property motive for the pursuit of something that can improve the lives of humanity as a whole. It's a nice change, even if temporary, against the backdrop of patented genes, seeds, and the like in our day and age.

*At least that's what it sounds like, I don't have an NYTimes login and don't have interest in one, so I didn't RTFA.

Don't worry, as soon as they have a drug the patent hammer will fall, as well as a million lawsuits. The drug will be $500/pill and we'll all wonder what the hell happened. (and don't tell me pills don't sell for $500 each, I've been prescribed them before and laughed my ass off when I tried to pick them up. Telling the pharmacist to go fuck themselves probably did more good than the pill would have anyway.)

Quite frankly I don't understand how it has been allowed for things like genes and sequences and such to be patented, and I think the notion that such things can be patented is ridiculous. But who am I, other some peon somewhere, right?

Actually, according to my cursory scan, you're a collection of Patented Nucleotide Sequences #47862, #32981, #441998, and #90210. A representative will be by shortly to either receive payment or present you with a Cease and Desist Existing order, and to conduct a more thorough scan for additional IP violations.

I think it was also governments who decided that science should be made profitable and not being fully paid by taxes, especially when the costs for science seems to increase more and more. Many scientist nowadays, have no other way then to depend on fundraising, and that can only be done effectively with writing papers. In some fields, for example computer science, there are areas where people put all their energie in writing papers with actually no content, just speculations and promisses. There are incrowds who only visit their own conferences and go on producing papers after papers with no real results at all.

I have been following research around Alzheimer's Disease in the past four years, because my wife has Early Onset Alzeheimer's Disease (she is only 53), and also in this area, I have encountered papers that present no result, but only talk about a potential application of a certain mechanism, which sole purpose seems to be fund-raising. And in a sense, I do not object against those papers, because if there is one disease that does not receive enough funding, it is Alzheimer's Disease. The costs of Alzheimer's Disease for society as a whole is probable of the same order as that of all forms of cancer together, but only a fraction of the amount of research that is put into cancer is put into Alzheimer's Disease. Especially in western countries, with a relatively large percentage of people over the age of 65, the costs for Alzheimer's Disease are becoming a great burden.

Of course science has never been perfect, but the state of science as we know it today is a peace dividend of the post-Soviet era. That includes the anemic state of space exploration.

Once upon a time, everything was all about the US vs. the Soviets. Anything decision more complicated than choosing the "Soviet" or "US" was quaintly labeled "multilateral" and dismissed as vaguely tacky and uncooperative. In those days, there was a huge contest to see which form of society was the society could produce the mos

Alzheimer's disease cannot be diagnosed unless through pathology, but for those with probable cases, this is good news. I'm glad to see this sort of information sharing. Science used to move at the speed of journal publishing schedules. Hopefully this will be influential in bringing science into the 21st century.

You are correct, but MRI scans showing tau protein throttling the living daylights out of brain cells can be done whilst the patient is alive and, if not well, at least breathing.

My father's research into Alzheimer's was interesting. He was able to show that patients with kidney failure suffered a build-up of aluminium in their bodies - including their brains - and that Alzheimer-like symptoms were to be found in such patients. He was also able to show that using desfereoxamine (a treatment for iron toxicit

Just this week there was an announcement that with a spinal fluid test may diagnose Alzheimer's Disease with a great level of reliability. In the fall of 2006 a spinal fluid test was used to diagnose Alzheimer's Disease with my wife. Then she was still in the early stages. In the past four years she has progress to the point that she needs help with almost all daily routines. She also lost the ability to write. I have enlisted her to be accepted in a caring home, because she a too great a burden for our fam

Profit has nothing to do with it. If the drug companies charged less, the drugs would be more widely purchased and there would likely be less of an underground market in them. The companies charge what the market will bear, NOT what will generate the most revenue. There is a huge difference.

Drug companies have been found experimenting on Africans without informed consent and without authorization. They have done so because it's a big continent and not one with governments likely to stir things up. They have

Agreed. The real issue isn't profit in itself, it's are those pursuing profit willing to allow what they do for profit to be limited by appropriate morals and ethics? The profit motive is good in a context where other influences keep people from crossing moral and ethical lines in the pursuit of profit. Make the profit motive the 'only' good, and it can't help but turn corrupt, as there's nothing to limit what's done for profit. The problem isn't the profit motive itself, it's the lack of belief in suff